Rare disease community members gathering together.

New NORD Member PALS Shares About the Impact of Free Flights for the Rare Disease Community

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Patient AirLift Services (PALS) recently provided air and ground transportation for a mom and son who went through years of not knowing the cause of bone pain, fatigue, brain fog and weakness. Both were officially diagnosed in 2017, with hypophosphatasia, a metabolic bone disease. Melanie has broken multiple bones without cause or direct trauma. Jacob lost a permanent molar last year and suffers from debilitating migraines, which cause him to sleep for periods of 19 hours or more.

In June, PALS facilitated flights for 14 rare disease patients and caregivers, including Melanie and Jacob, to attend the Living Rare, Living Stronger NORD Patient and Family Forum in Houston, Texas. During the Rare Impact Awards, Melanie heard a presenter talk about her disease and the symptoms sounded oddly familiar. Afterwards, she tracked down the speaker to connect, and was surprised to find other HPP families were there. They had yet to meet anyone with the same disease. It was the connection they had been looking for.

Melanie said “My biggest takeaway from the event was knowing we aren’t alone in our rare disease journey. Having a rare disease can be isolating because most people have no idea what your disease is and can’t understand the struggles we face. We enjoyed talking to other people with rare diseases, hearing their stories, sharing ours and making connections. The Living Rare, Living Stronger Forum was the first patient meeting we attended and we were so grateful to PALS for helping make that possible.”

Jacob is in physical therapy, occupational therapy and speech weekly, to help improve some of his symptoms. He just picked out the color (purple) for his first wheelchair, and his physical therapist told him she’d teach him how to do wheelies. He is looking forward to mastering his technique.

PALS recognizes and commends the honorable work that NORD is doing and is looking forward to an ongoing partnership. Working alongside organizations like NORD, PALS continues to partner families in need of critical air transportation with the charitable aviation community at no cost to the patient.

Thanks to three PALS Volunteer Pilots, members of the rare disease community from Illinois, Mississippi, Georgia, Louisiana, Indiana and Texas were able to attend the Forum who may not have otherwise been able to, due to transportation and financial barriers; this collectively saved them over 5,000 miles of driving!

Do you know anyone who would benefit from free flights to and from medical appointments? Help build awareness around the free flight program and share with the patients and families that do not have the care they need close to home. Call Patient AirLift Services to find out more information if you or someone you know needs help with transportation. 631-694-PALS or visit  palservices.org.

Melanie family picture